People with Disabilities in India: From Commitments to Outcomes “The problem is not how to wipe out the differences but how to unite with the differences.

People with Disabilities in People with Disabilities in India: From Commitments to India: From Commitments to

OutcomesOutcomes

““The problem is not how to wipe out the The problem is not how to wipe out the differences but how to unite with the differences but how to unite with the

differences intact”. differences intact”. – Rabindranath Tagore– Rabindranath Tagore

Philip O’KeefePhilip O’KeefeLead Social Protection SpecialistLead Social Protection Specialist

World Bank, November 2007World Bank, November 2007

The disability study – Background and sourcesThe disability study – Background and sources

Main sourcesMain sources – –- Analysis of NSS disability rounds and Analysis of NSS disability rounds and

censuscensus- Commissioned survey of villages in UP and Commissioned survey of villages in UP and

TN in 2005 (with DFID TF financing)TN in 2005 (with DFID TF financing)- Series of background papersSeries of background papers- Reviews of secondary literatureReviews of secondary literature- Field visits to 6 states during preparationField visits to 6 states during preparation- Lots of inputs and support from NGO/DPO Lots of inputs and support from NGO/DPO

community community

Disability study – main sectionsDisability study – main sections

DefinitionsDefinitions Socio-economic profileSocio-economic profile Attitudes to disability and disabled peopleAttitudes to disability and disabled people EducationEducation EmploymentEmployment HealthHealth Social securitySocial security Institutions and policiesInstitutions and policies AccessibilityAccessibility

Key messages of the reportKey messages of the report

The number of people with disabilities in India is The number of people with disabilities in India is substantial and likely to grow - disability does not “go substantial and likely to grow - disability does not “go away” as countries get richeraway” as countries get richer

People with disabilities in India are subject to deprivation People with disabilities in India are subject to deprivation in many dimensions of their livesin many dimensions of their lives. .

Social attitudes and stigma play an important role in Social attitudes and stigma play an important role in limiting the opportunities of disabled people for full limiting the opportunities of disabled people for full participation in social and economic life, often even within participation in social and economic life, often even within their own families.their own families.

India has one of the more progressive disability policy India has one of the more progressive disability policy frameworks in the developing worldframeworks in the developing world. . However, there However, there remain huge challenges in operationalizing the policy remain huge challenges in operationalizing the policy

frameworkframework

Key messages of the reportKey messages of the report

Increasing the status and social and economic Increasing the status and social and economic participation of people with disabilities would have participation of people with disabilities would have positive effects on everyone, not just disabled positive effects on everyone, not just disabled people.people.

India has a vibrant and growing disability rights India has a vibrant and growing disability rights movement and NGO/DPO and civil society movement and NGO/DPO and civil society involvement in service delivery for people with involvement in service delivery for people with disabilities.disabilities.

While there is a long way to go, focusing on “getting While there is a long way to go, focusing on “getting the basics right” on disability policy would allow for the basics right” on disability policy would allow for significant progress in the foreseeable future.significant progress in the foreseeable future.

The number of people with disabilities in The number of people with disabilities in India is substantial and likely to growIndia is substantial and likely to grow

Official disability ratesOfficial disability rates remarkably lowremarkably low – as in most of – as in most of SAR –– 2.13 % of individuals in census and 1.8 % NSSSAR –– 2.13 % of individuals in census and 1.8 % NSS

BUTBUT – even with this, NSS says 8.4 % of rural HH and 6.1 % – even with this, NSS says 8.4 % of rural HH and 6.1 % of urban have a disabled memberof urban have a disabled member

Major divergence on composition of disability Major divergence on composition of disability between official sourcesbetween official sources

Disability shares by type, census and NSS, early 2000s

0 10 20 30 40 50 60

Mental

Visual

Hearing

Speech

Locomotor

Multiple

% o

f P

WD

po

pu

lati

on

Census rates

NSS rates

The number of people with disabilities in The number of people with disabilities in India is substantial and likely to growIndia is substantial and likely to grow

The report estimates a wide range of 4-8 The report estimates a wide range of 4-8 percent of the population with a disabilitypercent of the population with a disability

Why the difference ?Why the difference ?

Measurement methods used in official Measurement methods used in official surveys/censussurveys/census

Based on previous reliable surveys of specific Based on previous reliable surveys of specific disabilitiesdisabilities

Social attitudes and stigmaSocial attitudes and stigma International evidenceInternational evidence Much of the “gap” is driven by mental retardation Much of the “gap” is driven by mental retardation

and mental health measurement and mental health measurement

The Disability Profile is ChangingThe Disability Profile is Changing

Share of Disability Adjusted Life Years by Cause

010203040506070

% 1990

2020

Disability does not go away as countries Disability does not go away as countries get richerget richer

0.00

2.00

4.00

6.00

8.00

10.00

AFR SA EAP MNA ECA LAC OECD HighIncome

Average disability rate pop. w eighted avg. disability rate

Disabled People are A Heterogenous GroupDisabled People are A Heterogenous Group

HearingHearing SpeechSpeech

0.0

05

.01

.015

.02

Density

0 20 40 60 80 100Age at onset

0.0

05

.01

.015

.02

.025

Density

0 20 40 60 80 100Age at onset

0.0

1.0

2.0

3.0

4

Density

0 20 40 60 80 100Age at onset

0.0

05

.01

.015

.02

.025

Density

0 20 40 60 80 100Age at onset

Locomotor Mental

0.0

1.0

2.0

3

Density

0 20 40 60 80 100Age at onset

Visual

Disabled People are A Heterogenous GroupDisabled People are A Heterogenous Group

Extent of disabilityExtent of disability Share of all PWDShare of all PWD

Can not for self even Can not for self even with aidwith aid

13.6%13.6%

Can care for self only Can care for self only with aidwith aid

17.217.2

Can care for self w/out Can care for self w/out aidaid

60.260.2

Aid/appliance not Aid/appliance not availableavailable

9.09.0

People with Disabilities are Subject to People with Disabilities are Subject to Multiple DeprivationsMultiple Deprivations

They are PoorerThey are Poorer and have “conversion handicap” and have “conversion handicap” Households with PWD one quarter less likely to Households with PWD one quarter less likely to

report 3 meals a day year roundreport 3 meals a day year round They are more likely to be in low income groupsThey are more likely to be in low income groups

Figure 1.3

0

0.2

0.4

0.6

0.8

1

1.2

1.4

Q1 Q2 Q3 Q4 Q5

Incid

en

ce r

ela

tiv

e t

o a

vera

ge

PWD

PWD severe

People with Disabilities are Subject to People with Disabilities are Subject to Multiple DeprivationsMultiple Deprivations

They are much more likely to be illiterate and They are much more likely to be illiterate and out of schoolout of school

Figure *.*: Share of 6-13 year olds out of school by social category, 2005

0 10 20 30 40 50 60 70

All childrenMales

FemalesSCST

OBCMuslim

All disabledMentalVisual

Hearing

SpeechLocomotor

Multiple

% of category out of school

People with Disabilities are Subject to People with Disabilities are Subject to Multiple DeprivationsMultiple Deprivations

They have much lower employment rates and the They have much lower employment rates and the gap to the general population has growngap to the general population has grown

Figure 5.2

0

10

20

30

40

50

60

70

80

90

100

RM P

WD

RM G

EN

UM P

WD

UM G

EN

RF P

WD

RF G

EN

UF P

WD

UF G

EN

ALL P

WD

ALL G

EN

% of

wor

king a

ge po

pulat

ion

Figure 5.3

0

10

20

30

40

50

60

70

80

90

100

RM P

WD

RM G

EN

UM P

WD

UM G

EN

RF P

WD

RF G

EN

UF P

WD

UF G

EN

ALL

PWD

ALL

GEN

% o

f wor

king

age

pop

ulat

ion

People with Disabilities are Subject to People with Disabilities are Subject to Multiple DeprivationsMultiple Deprivations

They often have low awareness of rights and They often have low awareness of rights and entitlementsentitlements

94% of HH with disabled member have not heard of PWD 94% of HH with disabled member have not heard of PWD Act in rural TN and UPAct in rural TN and UP

Figure *.*: Share of PWD HHs not aware of entitlements

0 10 20 30 40 50 60 70 80 90 100

PWD certificate

PWD benefit

Food ration

Aids/appliances

Subsidy on credit

Employ exchange

Education stipend

Job reservation

Transport subsidy

%

TN

UP

People with Disabilities are Subject to People with Disabilities are Subject to Multiple DeprivationsMultiple Deprivations

They are subject to strong social stigma within They are subject to strong social stigma within community and families which is often community and families which is often internalizedinternalized

Figure *.*: Belief that disability a curse of God, rural UP and TN, 2005

0 10 20 30 40 50 60 70

All PWD

UP PWD

TN PWD

All non-PWD

UP non-PWD

TN non-PWD

% of respondents

India has one of the more progressive India has one of the more progressive disability policy frameworks in the disability policy frameworks in the

developing worlddeveloping world PWD Act, 1995PWD Act, 1995

National Policy on Persons with Disabilities, 2005National Policy on Persons with Disabilities, 2005

Ratification of UN Convention on Rights of Persons with Ratification of UN Convention on Rights of Persons with Disabilities (Oct. 2007)Disabilities (Oct. 2007)

State Policies starting (e.g. Chhattisgarh)State Policies starting (e.g. Chhattisgarh)

Sector-specific policies emerging – e.g. National Action Plan Sector-specific policies emerging – e.g. National Action Plan for Inclusion in Education of Children and Youth with for Inclusion in Education of Children and Youth with Disabilities – 2005/06Disabilities – 2005/06

But there remain huge challenges in But there remain huge challenges in operationalizing the policy frameworkoperationalizing the policy framework

Inherent challenges of inter-sectoral coordinationInherent challenges of inter-sectoral coordination Awareness among service providers, officials and Awareness among service providers, officials and

PWD often lowPWD often low Executive Coordination Structures very weak in Executive Coordination Structures very weak in

most statesmost states Commissioners’ offices usually under-resourced in Commissioners’ offices usually under-resourced in

funds and peoplefunds and people Mechanisms for service outreach below district Mechanisms for service outreach below district

level remain under-developed and unclear PRI level remain under-developed and unclear PRI strategystrategy

NGO sector vibrant but challenges to expand into NGO sector vibrant but challenges to expand into rural areas and to strengthen business processesrural areas and to strengthen business processes

But there remain huge challenges in But there remain huge challenges in operationalizing the policy frameworkoperationalizing the policy framework

Figure *.*: Top difficulties in applying for PWD benefits and services, UP and TN, 2005

0 5 10 15 20 25 30 35

Physical barriers

Distance

Lack of transport

Lack of information

Non-cooperative off icials

Lengthy/complex procedures

Corruption

Poor communication of rules

Other communication barriers

Other

No diff iculties

Share of PWD reporting as major difficulty

Key recommendation of the Key recommendation of the report: “Get the basics right”report: “Get the basics right”

What does that mean in practice ?What does that mean in practice ?

Preventive carePreventive care - both for mothers through nutritional - both for mothers through nutritional interventions, and infants through both nutrition and basic interventions, and infants through both nutrition and basic immunization coverage. Improve road and workplace safetyimmunization coverage. Improve road and workplace safety

Identifying people with disabilitiesIdentifying people with disabilities as soon as possible as soon as possible after onset - the system needs major improvements in this after onset - the system needs major improvements in this most basic function most basic function

Major improvements in early interventionMajor improvements in early intervention, which can cost , which can cost effectively transform the lives of disabled people, their families, effectively transform the lives of disabled people, their families, and the communities they live and work inand the communities they live and work in

Getting all children with special needs into schoolGetting all children with special needs into school and and giving young disabled adults the skills to participate fully in giving young disabled adults the skills to participate fully in family and economic lifefamily and economic life

Expanding efforts to Expanding efforts to improve societal attitudesimprove societal attitudes to people to people with disabilities, relying on public-private partnerships that with disabilities, relying on public-private partnerships that build on successful models already operating in Indiabuild on successful models already operating in India

The Good News…The Good News…

A lot of these things are already A lot of these things are already happening through many initiativeshappening through many initiatives

Good practice states like TN, AP and Good practice states like TN, AP and Karnataka show that major improvements Karnataka show that major improvements can be made at scalecan be made at scale

The question is how to mobilize social The question is how to mobilize social commitment and how to develop delivery commitment and how to develop delivery systems which can work at scale, systems which can work at scale, especially in rural areasespecially in rural areas